The Current - Should there be two autism diagnoses?

Episode Date: October 15, 2025

Should all autistic people share one diagnosis? Right now, there's only one diagnosis, Autism Spectrum Disorder, and some people want to change that. We speak with Alison Singer, the President of the Autism Science Foundation and the Autism Science Foundation of Canada. She says having one diagnosis hurts people like her daughter who is non-verbal and needs a lot of support — and that there should be a diagnosis of profound autism to help unlock research and support.

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Hello, I'm Matt Galloway, and this is the current podcast. Last month, U.S. President Donald Trump held a news conference to talk about what he called one of the biggest medical announcements in the history of his country. So I've been waiting for this meeting for 20 years, actually. And it's not that everything's 100% understood or known, but I think we've made a lot of strides. the meteoric rise in autism is among the most alarming public health developments in history. It's never been anything like this. Donald Trump went on to link the rising rates of autism to the use of Tylenol in pregnancy. Scientists were quick to say this link is unproven.

There is no conclusive evidence tying Tylenol use in pregnancy to autism. In April, U.S. Health Secretary Robert F. Kennedy Jr. pledged to find the cause of autism, saying this work was urgent. Autism destroys families. And these are kids who will never pay taxes. They'll never hold a job. They'll never play baseball. They'll never write a poem. They'll never go out on a date. Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children. For my next guest, the Trump administration's focus on autism has raised many concerns, but also, has surfaced a call to change how autism is diagnosed, to effectively split the diagnosis

into two, allowing for a separate diagnosis for those with severe autism. Allison Singer is president of the Autism Science Foundation and the Autism Science Foundation of Canada. She has a 28-year-old daughter with autism, and she's in New York City. Allison, good morning. Good morning. Thanks for inviting me. Thank you for being here. When you heard Robert F. Kennedy, Jr., say those words about the lives of children with autism, what went through your mind? Well, all of us who have children with autism or who love people with autism had very high hopes and a lot of optimism that RFK and President Trump were serious when they came into office and said they wanted to find the causes of autism. And we agree with RFK when he says we need to have gold standard autism science. But what we heard in that press conference that you just referenced, that was not gold standard science.

That was not even science. Now, the announcement that they made suggesting that acetaminophen taken during pregnancy could cause autism was not scientifically based. Any association between acetaminophen and autism is based on limited, conflicting, inconsistent, and premature science. and making this claim just risks undermining public health while also being very misleading to families who deserve to have clear and factual information from their government. I want to come back to those families and what they're looking for in a moment.

And we'll get your thoughts as well in just a moment on why you think this, there should be a rethink of the autism spectrum, how it should be split apart. But just before we get to that, tell me more about your daughter, Jody. How old was she when she was diagnosed? So Jody was diagnosed when she was two years and ten months, and she had issues from the time she was born.

She really didn't sleep. She couldn't eat. She was diagnosed with early colic, late colic. I've never seen colic quite like this before. And as she got older, we saw more and more early warning signs emerge. She showed no interest in other children. She played with toys in very unusual. ways. When I would try to play with her and take a spoon and pretend to feed one of her dolls,

she would flip the doll over and sort of become obsessed with the tag on the back of the doll that indicated the contents of the stuffing. So she showed early signs very early. And I think if I had known more of the early warning signs that we know now, she would have been able to have been diagnosed much earlier. And we do know many more of the early warning signs now. And that's because of our investment in research to find more of these signs. You told the New York Times, I realized this was going to be lifelong. We were going to continue to try to help her be the best Jody she could be. What did you mean by that, that you knew that this was going to be lifelong?

Well, I think as parents, particularly parents whose children were diagnosed in the early 2000s, there was a belief that if our children were enrolled in very high intensity, applied behavior analysis therapy programs and had speech therapy and occupational therapy, that they could potentially make one year's worth of gains in six months, that they could catch up due to the therapy and that they would recover and they would be able to go, they would become indistinguishable from their peers and be able to go to mainstream kindergarten. And that just wasn't the case. So we did enroll Jody in a very intensive early intervention program.

She had what I think I would consider the Cadillac of Early Intervention. I quit my job. I dubbed myself the CEO of Jody Incorporated, and I managed her early intervention program. But after two and a half years in early intervention, when she was ready for kindergarten, we had her retested. And she had made gains, but very minimal gains. And the gap between Jody and her non-disabled peers had widened. So at that point, I, like many parents, realized that this is going to be lifelong and that our goal, should not be for her to catch up to her peers, but to simply become the best Jody that she

could be. And that we had to find a balance between wanting her to gain as many skills as possible, but also loving her for exactly who she was. She was diagnosed at a time when the definition of autism itself was expanding. What did that expansion look like? We have to think back to 2013. She was diagnosed in the year, And in that time, we had five different subtypes of autism. And she was diagnosed originally with PDD-NOS, but the other subtypes were classic autism and Asperger syndrome. And the reason she was diagnosed with PDD-NOS when she clearly had all of the signs of classic autism was because the neurologist that I took her to didn't think that I, as her mother, could handle the psychiatric

stress of having a daughter diagnosed with classic autism. Fortunately, doctors don't do that anymore. They now diagnose children properly so that they can receive the services that they need. But in 2000, when she was diagnosed, we had different subtypes of autism. And in 2013, the subtypes were collapsed into one single diagnosis of autism spectrum disorder. And so since 2013, everyone, whether they are high functioning or very severely challenged by their autism receive the same diagnosis. So you have kids who are nonverbal and individuals who have abundance of language. You have individuals who have IQ below 50, so severe intellectual disability, and you have individuals with genius level IQ. You have kids who have self-injurious behaviors and

seizures and sleep disorder. And you also have kids whose social challenges involve, feeling very challenged when they're navigating the high school cafeteria. So they're all diagnosed. All of these individuals are now diagnosed with the same autism spectrum disorder. So I believe that the term autism spectrum disorder has really now become so broad that it's absolutely meaningless. When you say someone has autism spectrum disorder, you have no idea what their levels of symptoms are, what their levels of functioning are, and more importantly, what supports and services will be needed in order to properly meet their needs. What did that collapsing mean for people like Jody?

The collapsing really meant that people with profound autism like Jody would be left behind because what happened was there was a rise of the neurodiversity movement of self-advocates who could speak for themselves, who could participate in policymaking committees, who could participate in research advocacy committees. and they focused on the needs of high-functioning individuals. They had a mantra called Nothing About Us Without Us, but the issue really was who was included in us.

And they did not include individuals like my daughter when advocating for policies and for research. So for the last 10 years, people with profound autism have really been left behind. And as you said, in your belief, that idea of autism spectrum disorder is so broadly applied that it's meaningless. You've said that the idea that Elon Musk has the same diagnosis as my daughter is ludicrous. Why then do you want to split the autism spectrum, if I can put it that way, into two diagnoses? What would that do?

Well, if we were able to officially recognize a profound autism subtype, then we would be much better able to meet individuals' unique needs. So, for example, things like eligibility for specialized schools, for housing, and for other services could incorporate measures of medical complexity, communication ability, and adaptive functioning. Right now, unfortunately, programs that are specifically designed for people with autism are filled with very high-functioning people with autism because they are easier to service. They have fewer behavioral challenges. And so there's no room left, even in autism-specific programs, for individuals with profound autism. So by having a profound autism subtype, we would be able to make sure that there

were programs and services set aside specifically for those people with profound autism. And in addition, we could make sure that the staff that were assigned in those programs, that their training could be expanded to address the realities of managing the severe behavioral challenges like self-injury and aggression so that they wouldn't be afraid to enroll individuals who had more severe behavioral challenges. And then finally, research dollars could be targeted at developing. therapies and technologies and support models that are specifically designed to benefit people with profound autism. Chambers Plan employee benefits is not-for-profit, and that's great for your business. Chambers Plan supports businesses with 1 to 50-plus employees across Canada and reinvest surpluses to help keep rates stable.

Get flexible coverage for you and your employees with outstanding customer service and unmatched value. Benefit together with Chambers plan. Learn more at hellochambers.ca. Look, it's hard being the pop culture friend. You're the one who knows exactly what new show is the most watched show on Netflix right now, or you're on top of the film festival calendar. Whether you are that friend or you desperately need a friend like that, allow commotion to enter your group chat. It's a podcast hosted by me, Alameen Abdul-Mahmood, where I talk to people about the arts entertainment stories that you need to know and we share all the recommendations of what you should be reading or watching or listening to find commotion wherever you get your podcasts what would

that look like practically because i mean we said that the the categories of autism were collapsed in 2013 into the autism spectrum disorder but there's three levels in that right one two and three so if you have a diagnosis of profound autism and then something else what what would that cleavage look like, do you think? Well, I think we can look to the science to answer that question. You know, one of the reasons that was cited originally in 2013 when the DSM collapsed the subtypes of autism into the single diagnosis of autism spectrum disorder was that there wasn't good scientific evidence to substantiate the subtypes that you're describing.

But that has changed. Today, the science tells a very different story. We've had several large-scale genetic studies and phenotypic studies that show that autism is not just one thing, that there are, in fact, biologically and clinically distinct subtypes of autism. And researchers are able to identify clusters of people who differ in their genetics, in their developmental trajectories, in medical. in medical comorbidities and in their lifelong support needs. So these subtyping studies have been done looking at genetics, looking at biomarkers, looking at behavior, and they show that there are two, sometimes three, clear and meaningful subtypes of autism.

So, you know, in other words, what we're seeing in the science validates what we have parents have known intuitively for decades, that there are a meaningful difference. within the autism spectrum. And your belief is that if we, we broadly understand and act on those meaningful differences that everyone's needs would be met. You've said, and you said this to the New York Times, everyone's needs should be met, but we need to recognize that the needs are vastly different. That if we understand that there is difference, then it'll be easier to meet those different needs.

Yeah, I think, you know, the current one-size-fits-all diagnosis hides the reality that some people's needs are so complicated that they don't even fit within programs designed for the autism population. So my daughter has seizures, she has self-injurious behaviors, she has severe communication challenges, and her autism, there's very little resemblance to a quirky, genius-level, highly verbal undergraduate who's majoring in computer science and going to work for Microsoft,

who also happens to have, an ASD diagnosis, and yet they share the same diagnostic label. And the real issue is that that kind of mismatch creates confusion for policymakers and for service providers. And ultimately, it denies profoundly autistic people the support that they need and deserve. There are people who have autism who would use the language that you have used and use it against this idea of splitting the spectrum. They have said, said that people at the end of the spectrum that need less support are often just dismissed as being eccentric or quirky or different and that they don't get the support that they need.

And that risks invalidating their experience or lessening their supports. As one person said, Dr. Mary Doherty, who's an anesthesiologist in Dublin, we're not really autistic. That's the undertone of all of this. What do you say to that? I know that some people worry that splitting the autism spectrums. could fracture the community and result in in less services for some individuals who are higher functioning. That is certainly not the intention. I think we recognize that high support needs

individuals, even at the high end of the autism spectrum, the high functioning end of the autism spectrum, those who would previously have been diagnosed with Asperger's also need and deserve services, but that the services that they need are very different. from the services that individuals with profound autism need. But I understand that fear that they're expressing. I've been part of the autism advocacy world now for more than two decades, and I've been able to work alongside incredible self-advocates who can speak for themselves.

But my daughter and the thousands like her cannot. They're nonverbal. Their voices are literally absent from our conversations. And we need to be able to create space for all forms of autism so that everyone with autism can be seen and supported. And to do that, we have to stop pretending that one label can meet everyone's needs. I mean, I will say that we've heard from listeners with exactly those same comments. And in some of the conversations that we have had around autism and the comments made by Trump and by RFK saying that some of those voices are not being heard, some of the people, particularly the people who need perhaps some of the most support, aren't

being heard. What do you make of, let's just talk about the context that this is happening. The Trump administration and RFK Jr. say that they want to find a cause for autism. They linked it, as we mentioned, to Tylenol use in pregnancy as well as vaccines. RFK Jr. linked autism to circumcision saying that it's highly likely that because they're given Tylenol, they have an increased risk of autism as well. How do, as somebody who has, somebody who has, has been in, as you mentioned, the advocacy world for some time. How do claims like this impact scientific research into autism? I think claims like this really set us back.

I think sometimes the president and RFK speak as if they are the first people to think, oh, you know what, we should really try to find the causes of autism, when in fact very smart and dedicated scientists from all over the world and advocates from all over the world have been focused on this issue for decades. And so, as I said, we had a lot of optimism and hope when these announcements were made at the executive branch. But these hopes are quickly being dashed as it becomes more and more clear that the administration is not focused on the science. The hopes that you had, I mean, you talked about this earlier, and you talked about this earlier, and you talked about it to the Times.

Let me just read the quotation, that many parents of profoundly autistic children finally feel like their voices are being heard in this administration. For a decade, our children were left behind as research shifted to the priorities of very high-functioning autistic people. What were the hopes of people like yourself?

The hopes were that the research agenda, at least at the federal level, would shift and focus on trying to find the causes of autism. I mean, at the Autism Science Foundation, that has been our mission. We invest in scientific research, focused on finding the causes of autism and developing interventions and treatments

that are based on that underlying biology. And the hope was that the presidential administration shared those views. When RFK talks about autism in general, he's talking about profound autism. He may use the one in 31 number, or he actually has to use a new number, number now one. I've heard them use one in 25 and even one in 10. The prevalence in the United

States is measured at one in 31 and in Canada, one in 50. They quote the overall prevalence of autism spectrum disorder, which includes the very high functioning end of the spectrum, but they talk about people with profound autism. In the U.S., the prevalence of profound autism is one in 217 that comes from the CDC. So 27% of individuals on the autism spectrum meet criteria for profound autism. And that seemed to be who RFK and President Trump were focused on. And so as I said, there was a good amount of hope from RFK when we thought that that's where they wanted to shine their bright spotlight. But they're not using science. I mean, the idea that acetaminophin could cause autism is not backed by the science. They also talked about vaccines at that press conference.

Vaccines are at this point the best studied environmental, potential environmental cause of autism. We have a mountain of evidence exonerating vaccines. Vaccines do not cause autism. We have looked at vaccines through multiple lenses. We have looked at MMR vaccine. We have looked at vaccine ingredients like thymerosol, which is a preservative, an aluminum, which is an adjuvant that primes your immune system to make a more robust response. We've looked at the vaccine schedule. So we've looked at children who've received all of their vaccines or some of their vaccines or no vaccines. And in all of these cases, there is no difference in the rate of autism diagnosis between children who've received vaccines or MMR vaccine and children who didn't. So at this point, we know that withholding vaccines from children does nothing to

decrease the chance that they will be diagnosed with autism. But it absolutely leaves those children vulnerable to diseases that could really hurt them or from which they could even die. And even just this notion that the government should be studying vaccines in relation to autism is dangerous. Because, you know, think of new moms. They're probably not aware of the 20 years of science that's been done looking at autism vaccines. New parents might hear, oh, the government is studying whether vaccines cause autism. Maybe I should wait until we have that data. And so they withhold vaccines when, in fact, we have those data.

And in the case of vaccines, those data are very clear, very convincing. It's not a situation where more research needs to be done. those studies all show that vaccines do not cause autism. Do you worry, though, that those, what they're talking about may land with, I'm not talking about you specifically, but parents like yourself who are desperate, who are looking for information because the situation that they're dealing with at home is really, really hard. Those, you know, I don't, those parents are coming at this from a place of love.

Yeah. They love their children. And I think when you have a child who, you know, know is going to suffer with autism and have all of these challenges for the rest of their life. I think it's very natural to want to blame someone or something for the fact that your children has all of these medical problems. But I think we always urge parents not to be so blinded by their grief and their anger that they can't see the science or the lack of science in this case that's right in front of them. You know, we always urge parents to trust the science.

Can I just end by asking just finally about your daughter again? She's 28. What do you hope her future looks like? My daughter is currently living in an intentional community, specifically for people with autism and medical complexities. She lives in the Catskills in New York State, in a lovely farming-based community where she works. She is able to spend her time doing what she has always loved most her whole life, which is taking care of animals. She has loved animals since she was a little girl. When she was school-aged and was when we would take her out on the weekends, you know, we would take her to petting zoos. We would always take her to farms because she loved animals so much. Now she lives and works on a farm. She's raising pigs and they raise goats. I wish she

wouldn't kiss the pigs and the goats so much, but she loves them so much. She tries to hug them and kiss them. And she is so loving towards animals. So she has really been able to find a place where she can take her what she loves most in the world and turn it into a real vocation. So she, they raise animals, they grow crops, they have a restaurant on the campus that the whole community is invited to. It's a wonderful place. It's called the Center for discovery. And I only wish that there were more centers of discovery so that everyone with autism who wanted to live in an environment like that had the opportunity to do so. I must give you great joy to see that. My husband often says that Jody is the happiest person

in our family. That's amazing. Allison Singer, I'm really glad to have the chance to talk to you. Thank you very much. Thank you. Alison Singer is president of the Autism Science Foundation and the Autism Science Foundation, Canada. She was in New York. You've been listening to the current podcast. My name's Matt Galloway. Thanks for listening. I'll talk to you soon. For more CBC podcasts, go to cbc.ca.ca slash